Originally created to share news around our craniotomy adventure, the focus of this blog has now shifted to the continuing progress of recovery, general thoughts on life and staying in touch with our great community of friends.

Wednesday, June 10, 2009

Birthing Backwards: Nine-Month Status Report

Our medical adventure has been a great experience, once you get past the weirdness of having a brain tumor. Our family is all closer than we were before and we revel in the friendships and community that have supported us throughout. The pace of life is slower and we’re enjoying that. Our renewed connections with many friends is a wonderful thing. Going down the list from there, the great neurosurgeon six blocks from our house tops the list of good parts of the experience; if you’re reading this now, you know it’s a long and wide-ranging list, as all of its elements have been described here over time. Writing this blog and hearing from you, a gloriously eclectic community of readers, has been an unexpectedly powerfully contributor to this era.

Taking stock nine months to the day after reporting for surgery, things are good. There are lots of low-level residual effects, most of them physical. The scalp sensitivity persists, though in a greatly diminished form, and the incision line still has one sensitive spot where we think there are ingrowing hairs. The dents and ravines in my skull are odd, but completely covered by my serendipitously-perfect hair for brain surgery. My balance is still a little strange at times, but that is improving with work. The limitations in movement in my arm and shoulder are the most serious of the persistent physical symptoms, and even those are pretty mild as these things go, with hope for continued progress. We’re still not sure--and probably never will be--what combination of brain and shoulder injury caused this. The tumor was pressing on the part of my brain that controls the right shoulder, we were told, and then I was on the operating table on that side for five hours, and then again lying on that side heavily sedated in the ICU. Whatever the cause, we’re hopeful with the renewed physical therapy that I’ll regain more ground. With the diagnosis of the cortisol deficiency, my energy is rebounding and I feel better than at any point in the last two years. There’s still some ground to be regained in both energy and general acuity (we hope), but we’re also assured that will keep improving for at least another nine months or so. All in all, lucky beyond description given the size of the meningioma and its location in the communication center of my brain.

Early on, as we were assimilating the diagnosis and belatedly recognizing tumor symptoms we’d explained away over the years, I’d hoped that one long-term outcome would be a greater confidence in my sense of body and self. Instead of dismissing aches and pains, I’d come to trust myself and pay attention to them, having just lived through the consequences of ignoring ever-increasing signals of a serious problem. That was a forlorn hope. I continue to react to each change with a belief laid down in childhood that I’m a hypochondriac, so whatever problems occur are imaginary or, at the least, exaggerated. Sadly, among the incredible benefits we have and are reaping from our adventure, that’s not going to be one of them.

In other nine-month medical adventures in my life, I managed to produce really outstanding products. This experience has been the reverse of those. I worked on this tumor longer and have spent much more time recovering, so it would have been nice if this longer gestation period had produced something even remotely as great and wonderful as the birthing process. We’ve tried, but we haven’t found nice things to say about the tumor itself. Maybe we never really got a chance to bond since we didn’t get to see it? Whatever, we’re glad it’s gone.

We still plan, one of these days, to post the new brain scans showing the reoccupied tumor void: the disk got lost in the pile on Michael’s desk by his computer, so that’s been delayed. He is positive he’s going to unearth it “really soon” as he embarks upon yet another archeological expedition in that region. To whet your appetite, I can tell you it’s a nice contrast to the first set of images that contain the tumor. I still work on assimilating what it means to have had a brain tumor and still don’t have any great insights to share on that topic.

Has this process yielded any wisdom? Hard to say. It’s reinforced things we already knew, like the importance of family and friends, the influence of good (and bad) communication, the value of living in a university town, how much we care about education and skill in professionals and the powerful effects of reaching out to other beings, both for those who reach out and those who are touched. Throughout, we’ve been on the receiving end of so many unbelievable kindnesses and so much love. We have much to repay as well as to pay forward.

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Our Medical Adventure

In late August 2008, Tina was diagnosed with a large meningioma in her left parietal lobe. It was successfully removed on September 10. The very first entry from September (The Beginning) provides some background information.